I was planning to do a separate website on my journey with fibro and I have recently decided not to for two reasons. First, I am currently concentrating on Vegas in Heels. Second, I am honestly hoping that fibro isn't a major factor in my life after I get through this virus treatment. Maybe I'll get that website going in the future. But for now, it's all here in the fibromyalgia diaries category.
So, here we go. A little more than three weeks ago, I started treatment for the Epstein Barr Virus. As we have discussed previously, my levels showed that the virus was reactivated and some of my numbers were through the roof. (Yuppie flu, right? sigh.) For the treatment, I'm on a ridiculously strong anti-viral medication called Valcyte. For the first 21 days (which ended this past Thursday), I took two doses of 900 mg per day. Once a week, I get a super viral IV at the Fibro and Fatigue Center, which contains some mystery ingredients like licorice root, which apparently is some sort of natural anti-viral bit.
I've learned a lot recently about a little biological phenomenon called the Herxheimer reaction. Herxing (yeah, it's a verb too), in Danielle terms, goes like this: My body is chock full o' virus. Valcyte is attacking the virus. The virus is dying and releasing dead virus debris into my body. Like virus nuclear waste. Upon release of this virus nuclear waste, my body reacts the same way as the it does when it is infected in the first place, which involves fatigue, aches, etc. (hmm just like normal, right?) If you aren't following, the virus is dying and making me just as miserable when it was alive.
In order to counteract the Herxheimer reaction, I take some voodoo potion called Burbur Detox. I seriously carry around a vial of potion in my purse, measure it out by drops into a small glass of water and drink it up. mmmm. This helps to neutralize the toxins released during the die off.
It is completely logical that you are thinking, THIS IS BULLSHIT, but the burbur works. I forgot to take it with my dose one night. Oh, did I play hell. I swear, there was a tiny cyclone of dead virus swirling around my stomach. I was extremely unhappy.
Anyway. Three weeks with super doses of Valcyte. Generally speaking, my reactions were not horrible. As long as I took the burbur, I generally only experienced stomach discomfort. It interrupted my sleep significantly, so I just took more valium as part of the nighty night cocktail.
The IVs, on the other hand, are complete hell. The nurses warned me over and over to take a double dose of burbur about an hour before I went in. Due to the tiny size of my veins, IVs are miserable for me anyway because they have to use the baby needle and the drip is slow. The first week, no big deal. No major reactions. The second week... Yeah. I went home and felt completely weird. Like my head was on the other side of the room. Like I had been run over. Something awful. Went to bed. The next morning was pure misery. I completed major negotiations just to drag myself out of bed. My entire body was one big ache. I could barely lift my arms without wanting to cry. (Showering was a treat, as you can imagine.) As I got through the day and took a couple of doses of burbur, I regained functionality. (If Kellie comments, she will tell you that it was like talking to a complete moron at work that morning. More so than usual.)
Now, let's discuss week three of the IV. I barely want to discuss this. But I'm going to because the six of you want to know. The IV was relatively uneventful. I was okay on Thursday night. Friday morning was not bad, but I grew progressively more fatigued as the evening went on. I was, let's just say, not pleasant to be around and a bit combative. (The Boy can attest to that.) Honestly, I was hearing things. Yes, actually hearing things. Phones ringing. People talking to me. You name it. I was hearing it. Kinda scary.
I went to bed ridiculously early because I simply could not be awake any more. I was getting achy and, well, starting to doubt my sanity because I WAS HEARING THINGS. I woke up around 2 a.m. because I was melting. It has to be cool in the room for me to sleep. Uncomfortably cool for the average person. I had set the thermostat to 72 before going to bed, so i assumed that the melting was because of the meds. I seriously sat there for two hours, essentially going insane and not getting back to sleep. I cannot describe my pain level at that time. It was unbelievably bad.
Around 4:30, i got out of bed and went to the thermostat. It was on 78. Um, WTF. The thermostat upstairs must never go above 74 in the summer or I will not be able to sleep. It was on 72 when I went to bed. I lowered the temperature and went back to accuse The Boy of trying to kill me. He assured me that he had not. [It turned out that the wee boy had turned it up because it was "too cold in his room. " That situation has been addressed as there are any number of very warm cartoon themed blankets in this roomand I will put a locked box around the thermostat if it ever happens again.]
By that time, I was in so much pain that I could not sleep with my ear plugs and someone else in the room may or may not snore (I'm not pointing any fingers). Seriously, my teeth and hair hurt at that point. I tried to go downstairs, but the cats were stirring and it hurt to sleep on the couch. I eventually laid in bed, sobbing, for about an hour. I could not handle the pain. The sun was rising and I took my sleep mask off (to avoid the dampness from my tears). At that point, I started seeing things. So, let's review, worst pain of my life, hearing things and seeing things. Super fun. All of the things that scared me about the treatment in the first place. Eventually, I fell asleep for a couple of hours.
When I woke up, the pain was still bad. Lots of burbur was involved in my morning and it faded. I was eventually able to go into the office (my workload has picked up during the treatment, which has been a big motivator in making sure that I get my ass out of bed when I want to give into the herxing) and I might have gone to Zappos afterward. Then, maybe I had some In n Out for dinner, complete with milkshake.
Today, I'm fine. I'm sore, but that's nothing new. I haven't had any sort of hallucination since the insane sobbing incident.
I have five more weeks of treatment. 28 days of Valcyte left. My last IV is 9/4. I have an appointment with my doctor on Tuesday, at which, I fully intend to plead my case on why I do not want to continue the IVs. He will tell me why I have to. I will whine and follow his orders. I can only hope that the side effects will lessen now that I only have to take one dose of 900 mg of Valcyte each day.
That's it. I use this as my excuse for any time that posting is light over the next few weeks. It's hard to get up the energy after working a full day. Go visit Vegas in Heels. That has a new post every week day. (They are pre-loaded, so it requires minimal effort on my part.)
You're a human being after my own heart. The insomnia, the fatigue, the whole mess. I've recently discovered that the Epstein-Barr virus has been the source of the blight of my existence for the past 20-plus years. No doctor ever knew about it. Shot of B-12? "Get more exercise." "Try Zolof." Ultra-sound, anyone? So now i'm looking for a cure. I googled "Epstein-Barr" and "insanity" and found your blog. Good luck with the Valcyte treatment. I'll be staying posted on your progress and pulling for you. It's great to find somebody out there dealing with the same thing I've been dealing with for so long.
Can the Valcyte treatment completely eliminate the Epstein-Barr virus from the body? During the treatment, if sweets are eliminated from the diet and candida is under control, must one stop all consumption of alcohol? These are the questions. But the cosmic grape aside, the thought that I might actually be able to get this virus out of my system after so many years of grappling with it gives me a shot of optimism. To think that someday I might be able to get run-down and sleep deprived and not have to worry about the onslaught of another attack of "the blahs." I'm tired of thinking about my mortality! Anyway, thanks for the blog. --BR
Posted by: BR | July 18, 2009 at 12:41 PM